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Monday, 11 December 2017

Changing Places Campaign | #FitToBurst Part II | When Doctors Don't Listen

(Title Image: Lady stick figure desperate for the loo, + sign, wheelchair symbol = Changing Places toilets) 

This post is part of a series focusing on Changing Places, in collaboration with Muscular Dystrophy UK's #FitToBurst Campaign. It might be helpful to read PART ONE FIRST!👍

Where we left off in Part 1, I had been referred to a Urologist to discuss the ins and outs of what it will take for me to undergo unnecessary surgery for a Suprapubic Catheter (aka SPC). Fast forward 4 months to November, I was seen at Royal Bolton Hospital.

Before I go into what was said and where I go from here etc, I think I need to explain the stupidity that is whoever makes NHS patient referral protocols. Any patient is referred to their nearest, local hospital when its NEW referral to a specialist doctor. That's fair enough. Only (now this is where it gets REALLY dumb and starts to waste time and MONEY..) as someone with complex medical needs due to my rare Neuromuscular Disease, my Neuromuscular Specialist had to refer me to Royal Bolton, knowing I would need the surgery done under the speciality of Wythenshawe Hospital (where all my NMD medical team are based), just to follow protocol. Royal Bolton have to declare, as my local hospital that they cannot handle me in order to get me referred back to the hospital I came from, but just a different specialist area - in this case Urology.

(Quote Image: "I'm not a doctor. I just have a tremendous amount of common sense.")

My NMD specialist told me straight, it is crazy! He knew I'd end up back at Wythenshawe but we have to do a merry dance to get me under a Urologist at the hospital I go to anyway? Doesn't make sense does it? It makes you realise just how many ways the NHS is wasting everyones times and money that they don't have in the first place...
Anyway, I thought,"OK no big deal... I'm going to see a Urologist at Bolton, they'll freak out and not want to touch me with a barge pole and I'll get thrown back to the expert hands at Wythenshawe".... Nope!

It was 14th November '17 when I went for my first appointment with this bog, standard Urologist at Royal Bolton. I had really worked myself up to fight my corner. I was going to go in there, explain the toileting situation, the antibiotic resistant continues infections, risk to my health and push the fact that I know MANY, MANY other women with Muscular Dystrophy who end up having a SPC fitted due to mobility toileting issues. What I hadn't prepared for was the fact Dr Lee didn't know anything about me bar my name.

(Image: A RADAR key, beneath it reads - The answer is a RADAR key. With your own RADAR key you can unlock most disabled toilets in the UK)

After I'd explained I lack the ability to self-transfer and only Changing Places facilities had what I needed to toilet, she looked at me blankly and said "Can't you just get one of those special keys to access disabled toilets?" It was clear the extent of my mobility limitations had totally gone over her head. I took a deep breath and explained with more details that Yes, I do have a radar key to access toilets supposedly catered to people with disabilities but they do not meet my needs. I can get in and stare at the toilet, but I cannot get onto it to use it. She nodded, flicked through my file and looked at me again, "So you can't get onto the toilet?"

"No, not without a hoist and adult size changing table."
Then proceeded to educate her on the Changing Places Campaign, how there's currently as of Nov 2017 1440 Changing Places toilets that meet the needs of every disability, no matter how severe but given this number is across the entire UK, the nearest one to me is 2 hours away. She just totally blanked me.

"And I suppose you've explored and exhausted all other toileting methods?"
"Yes I have, I've been non-ambulantory since age 6 and lost my ability to use standard disabled loos age 14 after spinal surgery. I have been fighting against catheterisation and done harm to my health by holding it the majority of the day everyday, just to live a normal life." I was starting to get weary at this point.

"How about female urinals?" Dr Lee was very serious that this was the obvious solution!

I took a deep breath and asked God for patience, "I cannot get my clothes off in my powerchair, I need to lie down and then be transfered via a hoist. I cannot safely tetter on the edge of my seat to use a female urinal without one person holding me and another holding the urinal. That's the only way that'd work and to me that's very undignified and I wouldn't be able to relax to urinate with such invasion of privacy."

I felt defeated already, she totally didn't get it. What didn't help was there was a male student in the room listening to intimate details of the true extent of my personal difficulties with toileting in great detail. Normally I'm fine with students and believe they all need to start somewhere. But I wasn't even asked if it was OK he was present and the way Dr Lee was talking to me was beginning to get degrading and humiliating. This in my mind would say to this student, this is how you treat patients with complex medical needs.

Dr Lee gave the final blow near the end of the appointment by telling me she was NOT in favour of the idea of getting a Suprapubic Catheter. She wanted me to have a regular urethral catheter with a bag for 2 months, if I tolerate it and can go freely to the toilet to prove a reduction in my infections, then and only then will she consider me for surgery. I was mortified. I didn't want this. I didn't want a normal catheter that'd aggravate my UTIs, interfer with my sex life and worry about changing bags all the time. I want and needed the least invasive long term solution. I had planned to use the SPC with the flip-flo valve so it'd be bagless. I'd simply hold the tube over any toilet and unlock the valve to urinate without the need to transfer. The valve insures I keep my bladder muscles working by holding the urine still and giving me the sensation. Having a bag constantly would risk me being permanently unable to feel when I need to go and ultimately meaning a bag forever as my bladder muscles would stop working due to lack of use. Dr Lee didn't understand a think about Neuromuscular Diseases, nor got why keeping my bladder active and being bagless was important to me. I am not incontinent after all.

(Quote Image: "Sometimes it's better to keep silent than to tell others how you feel. Because it hurts badly when you come to know that they can hear you, but can not understand.")

I was on the verge of tears whilst I was given a slip for the district nurse to come put in a catheter at home. I'd have it in for 2 months until my next appointment with Dr Lee. My quality of life was in her hands, I'd lost control of my wants and needs, along with my fight. All the while knowing if I didn't comply, she wouldn't authorise the SPC surgery that I know would work for me. She made zero attempt or mention of referring me back to Wythenshawe Hospital. Told me she'd do the surgery under General anesthesia (despite I need to be in a specialist hospital for this under the care of anesthesiologists that know about NMD patients that have fatal risks with going under) and it'd be done at Bolton. I was not comfortable with this, Bolton don't have the facilties or expertise to deal with me with my NMD.

I went home and wrote an email to my Neuromuscular specialist explaining my awful experience with Dr Lee, the ultimatum I was given and how I felt about everything. I joined some Urology support groups on Facebook to get some insight. It was in one of these groups, they suggested I asked for the flip-flo catheter on the temporary urethral catheter as a compromise. At least then I could use the time with this catheter as practice to what life would be like with the SPC as it's the same valve etc. I felt much better knowing now, I COULD go bagless with the urethral. They also told me to ask for the longest catheter or a male version so I'd have enough give/tubing as a wheelchair user to fish it up through my waistband and dangle it over the loo to drain. The support I got from other people with catheters and urology issues was incredible and by talking to them I realised it is still my body, I'm still in control and it's up to me what happens next.

Two weeks after, the district nurses turned up at my home without me even aware when they were coming. Naturally I wasn't in, what with the school run, appointments amongst other things I'm quite an active disabled person. Yet, I was penalised for being active. My PA was at my house doing some cleaning while I was out, so answered to the door to the DNs and they told her that they'd come again the next day between 10am-1pm. That was fine. I stayed in especially after dropping Abbie off. Only to get a phone call at 11ish from a snotty woman telling me that as it's clear I go out and get about, I do not qualify for District Nurses services at home. It's only for housebound patients.

(Image: District Nurses NHS poster, highlighting how District Nurses go the extra mile for their patients)

I was gobsmacked and frankly pissed off now. She spoke to me like I was a time waster, like I did not appreciate their services. If I had known they were coming, I'd of been in! I ended up saying;

"Listen, I know you have a lot of people to see but I don't think you even realise I'm in a wheelchair. I'm completely non-ambulantory. I cannot have a catheter placement done at the GP surgery because I cannot self-transfer onto the table, the same reason I asked for a catheter in the first place. You cannot punish me for being an active wheelchair user!"

She bluntly responded, "So what do you normally do then?!"

"I need a hoist and an adult size changing table." I'm getting day-ja-vu here!

After she still insisted I didn't qualify for at home services, despite it being impossible to place the catheter without me getting on a table via a hoist. So I put in an official complaint with the District Nurses in Bolton and SUDDENLY, I qualified.

To add insult to injury after all I've been through with my request. They ended up catheterising me with a catheter that is so incredibly short, I cannot get it above my waistband to use in my wheelchair defeating the whole point. I had told the DN before she placed it to make sure it was long enough for me to use how I need. She also insisted I have a bag. As per Dr Lee's orders. I told her if she won't swap it for a valve, I want the catheter out! I was not willing to cause my bladder muscles to die. She rang through to the office and arranged for another DN to come out with some valves. So she bagged me and told me to stay on, the urine soaked sheet (might I add!). She hadn't put anything under me to catch anything when she catheterised me. And she was asking me to simply lay in it to make it easier for the other DN who'd be out within 2 hours! I was humiliated and my toddler was running about, I needed up in my chair. After she left I asked my PA to help get me up, the bag she put on temporarily was almost full which was concerning as she never showed me or my PAs how to change them if it needed it before the other DN arrived. I ended up unable to get dressed because this bag was so full and this is when we realised the catheter itself was way too short and wouldn't work with the valve over the loo the way I needed to use it. This other DN arrived with the valve and changed it, I told her that the catheter was way too short for a wheelchair user to drain over the loo. She simply told me;

"I can't change catheters, just the valve."

No apology or sympathy or bit of understanding for the situation. I felt like I had to beg her to ask the other lady to come back when she's available to change the catheter to a longer one. She said she would and left. A week later, I still have the short catheter. They haven't found the time to come change it because it's not priority to them. In the meantime I'm toileting like this...

♿ Hoisting onto the bed, pants down, hoisting up and hovering over a bedpan and PA is unlocking and draining my catheter.

♿ Can't go to the toilet when I'm out still

♿ Still holding my wee all day long

♿ Still needing a hoist and change table to toilet which I can only have access to at home or in a Changing Places toilet (which are very few and far between up and friends the country)

Added indignity of a PA doing the valve draining as it's too short and not enough give for me to use myself.

I would say my toileting situation is now more inadequate, undignified and ridiculous now with this short urethral catheter, that's unsuitable, that I felt forced to have to get what I really need.

Despite I'm still in fights with the District Nurses over changing the catheter to a longer more functional one until I see Dr Lee again on 6th Jan, I honestly feel like I'm going to be stuck with this until then.

All this because I can't self-transfer.

All this because Changing Places toilets aren't mandatory in every public building

All this because I and 250,000 disabled individuals need to wee like everyone else

If you've been touched by my story please sign and share the petition on making Changing Places available in all town centres by clicking here -

Changing Places Petition

Sunday, 10 December 2017

Top 10 Things People Have Asked Me As A Wheelchair User

Firstly I want to start by saying I am one of those individuals who is able to laugh at themselves and the circumstances I may find myself as a direct result of my disability. I've been wheelchair dependant since 6 years old, so I have had the WORLD'S worth of comments. This is no new feit to me and most of which I've never got my knickers in a twist about. Everything from the good, "I'm so inspirational for wheeling outside my front door every morning to face the world from the horrendous restraints of This wheelchair!" To the down right ugly..."Maybe if you'd of tried harder you would of walked longer?" -_- Seriously.

"Top 10 Things People Have Asked Me As A Wheelchair User"

1. "Were you in a car accident?"

My Answer: "No, I was born with a progressive muscle-wasting condition"
What I'm Actually Thinking: "Why do most able bodied people assume if you're in a chair you must of been in a car crash and paralysed at some point in life?"

2. "So, if I dropped a brick on your foot could you feel it?"

My Answer: "Lol yes, please don't try that I am not paralysed" while nervously laughing
What I'm Actually Thinking: What if I couldn't feel it? Would they test out their theory anyway? 😱

3. "My friends, neighbours friends cousin twice removed is in a wheelchair too! Maybe you know them?"

My Answer: "Contrary to popular belief, we don't all know each other." Often met by an insulted scoff. I need to be more polite I guess.
What I'm Actually Thinking: Maybe if we were all still institutionalised....

4. "Have you ever thought of participating in the Paralympics?"

My Answer: "I have a muscle-wasting condition, you have to have some degree of physical strength to be a Paralympian"
What I'm Actually Thinking: I wonder if they'd consider typing super fast as a Paralympic sport?

5. "How do you go to the toilet?"

My Answer: "Get out my wheelchair, do my business, get back in."
What I'm Actually Thinking: So tempted to educate them on how difficult it REALLY is when the bog standard disabled loo is useless to you and the holy grail of a Changing Places bathroom is just too far to commute before my bladder will burst. Better yet, let's challenge this person do to "Pee Math" and have 1 1/2 cups of liquid a day so they can make it all day without needing to go home. No that's just evil...

6. "Can you still have sex?"

My Answer:"Of course, disabled individuals are NOT asexual"
What I'm Actually Thinking: You must have never got creative or thought outside of the box in the bedroom...

7. "Do you sleep in your wheelchair?"

My Answer: "No, I own a bed and I sleep in a bed like everyone else.."
What I'm Actually Thinking: Seriously, do they think wheelchair users bums are glued to their cushions lol

8. "Are you supposed to be out here on your own hunni? Where's your carer?"

My Answer: This one particularly urks me so I count to ten in my head before answering, "I am just fine thanks!"
What I'm Actually Thinking: I so should of said something sarcastic such as, "Are you sure YOU'RE OK to be out here on your own hun? Do you need me to call someone?"

9. "Have you ever got a speeding ticket?"

My Answer: Awkward laugh as I speed past, "Nope, not yet!"
What I'm Actually Thinking: If I had a pound for every time someone said this I'd be so rich by now..

10. "You ever tried (insert vitamin/herbal/alternative/spiritual/potentially harmful treatment here) so you can walk again?

My Answer:" Yes I've tried (insert miracle cure here) and it appears not to have worked," while I gesture to my legs to make a point.
What I'm Actually Thinking: I bet they actually don't believe I've tried alternative means to treat my MD and want to remain this way lol.

So there concludes my "Top 10 Things People Have Asked Me As A Wheelchair User." I hope some of them made you laugh 😁 because let's face it....sometimes that's all you can just laugh it off!
Comment below with YOUR Top questions as a wheelchair user...I'd love to hear them!

Saturday, 25 November 2017

1 in 4 Women With Disabilities Experience Domestic Abuse | #DisabledSurvivorsToo

(Title Image incorporates white background with hands pressing on glass)


It may come as a surprise to a lot of people, after all this is a topic that is never really discussed openly in the disability community, nevermind with the general public. I can only account that due to the fact people with disabilities are expected to be these strong, inspiring individuals who have fought for their place and rights in this world. From day one we are fighting against all odds. People forget that our community is still vulnerable to all the horrors out there. Bad things can happen just as much to us, ontop of our disabilities and in saying that things like domestic violence and abuse are actually HIGHER amongst persons with disabilities, as a direct result of their limitations.

Just as in the rest of society, women are more commonly subjected to domestic violence/abuse and assaults than men. In a recent study, it was found that 1 in every 4 women with disabilities experience some form of abuse at least once in their lifetime. To add to that, disabled women can end up trapped in violence longer than able-bodied women in similar circumstances.

(Pictured: Statistics of Domestic Violence and Disabilities breakdown)

The most harrowing comment that's made to victims of domestic abuse is, "Why didn't you just leave?" This statement insinuates to the victim that they are somehow to blame for being abused and caused it to continue longer by simply not getting away. There are many common misconceptions around victims that need to be stopped.

(Pictured: Woman silently screaming with the quote; "Many people who have never been in an abusive relationship have no idea how difficult it is to get out.")

What people don't seem to realise is that domestic abuse doesn't materialise overnight. The person doesn't suddenly go from having a healthy, loving relationship to being hit or beat. If it did there would be less victims and more abusers locked up. Domestic violence/abuse ISN'T all about inflicting physical pain on a partner, it's about control. Control that is often built on the abuser having deep insecurities and paranoia over their partners life outside of their relationship.

Infact the abuser doesn't set out to become one. Very slowly they start to control subtle parts of their partners life, often in a bid to make themselves feel more secure. E.g Not wanting other men to lust after their partner so they'll suggest certain clothing that covers more skin or doesn't flatter her in a bid to make her less attractive to other men. Then build on from there to saying she doesn't need make-up or her hair looks nice in ways she doesn't normally choose. Progressing onto telling her not to go certain places alone, making it to be for her own safety. Before the victim knows it they have lost their sense of identity and are asking permission to go out with friends. The abuser may start to create friction between her and her friends or family so they fall out, meaning she's not asking to go out to meet with them as much. Some go as far as faking conversations to make the victim think her family/friends are not looking out for her best interests or don't care about her. A ongoing tactic to isolate her and make her depend on him.

(Pictured: Know The 8 Before It's Too Late the signs of domestic abuse - 1. INTENSITY, 2. JEALOUSY, 3. CONTROL, 4. ISOLATION, 5. CRITICISM, 6. SABOTAGE, 7. BLAME and 8. ANGER)

It isn't obvious to the victim that they are actually being abused until said abuser has made significant manipulative changes in her life and her self-esteem has taken a severe beating. The relationship was once healthy and love can blind them from realising the true extent of the situation until they're in so deep, once the realisation hits, the abuser feels the need to take it up a notch in a bid to remain in control. At this stage it often turns to physical violence. Controlling the victim with fear itself.

"Why don't they just go to the police? The police can protect them surely?" Is what people assume from seeing domestic violence on TV.

Going back to solely looking at women with disabilities being abused, here are some key points that stop this group of women from getting out and getting help sooner;

⛔ - Women's shelters and refuges aren't usually wheelchair accessible
⛔ - The abuser takes away methods of contact by putting phones/laptops etc out of reach
⛔ - Having issues with carers/personal assistants or outside help coming in the home and pretending to give their partner more "freedom" by taking over as caregiver, when in fact its to make the victim depend solely on them for their most basic needs to survive.
⛔ - Brainwashing them into believing their family/authorities will not believe them. This is because the abuser is often put on a pedestal by the victims family/friends/community for taking on the care of a disabled partner, even if taking on the "care" wasn't something that their partner consented to. Society often deems a spouse or relative taking on a loved ones care as heroic even

(Pictured: poster on society deeming partners being carers to disabled spouse as saints)

⛔ - By making their victim rely on them for their care needs, abusers often with hold assistance with personal care (toileting, showering, changing clothes etc), getting to hospital appointments and access to needed medications for their condition. Ultimately neglecting their needs as a way of control and show dominance.
⛔ - As the abuser becomes the sole caregiver and there's no other in-home help in place, the disabled partner fears being put in a nursing home type facility if she does get away, as she'd be homeless and need help in ADLs
⛔ - If there's not enough proof (especially if no physical bruises/marks on the body), despite getting away and informing the police, studies show many disabled individuals end up back with their abusers as there's nowhere for them to go. A highly dangerous result as the abuser will now have it in for their victim and inflict further and more violent behaviour to keep them quiet
⛔ - Being made to think they deserve it for being such a burden to their abusive partner and society. Many victims self-esteem becomes so broken they believe their abuser that they should be punished for being ungrateful for their abusers help in daily life
⛔ - Threats to hurt or kill them or their children if they catch them trying to get away or talking to outsiders about what's been going on behind closed doors. 

(Pictured: poster highlighting examples of abuse from carers)

So to round those points off, a victim that has a disability is far more likely to become trapped, brainwashed and controlled by the abusive partner. They have the much harder reality of an escape plan that must include someone to help and somewhere accessible to go where the abuser is unlikely to find them, in the case there's not enough evidence to charge them. When communication tools and privacy are taken away, the escape plan becomes an impossible plight to undertake alone. 2% of these women are thankfully rescued by concerned family/friends that have witnessed subtle degrees of aggressive or manipulative behaviours with their own eyes. The abuser, though often very clever and well practiced at controlling themselves around company, at one point or another will slip up and cause suspicion of mistreatment.

What can you do if you suspect someone you know is being abused and has a disability? (Refer back to Know The 8 Before It's Too Late earlier in this post for ways to tell)

✔️ - Do NOT under ANY circumstances (no matter how upsetting it is) confront the abuser, especially while the person is still in the situation. This can cause greater violence towards them as the abuser will assume they've managed to tell someone.

✔️ - Find excuses to visit on spec and try and tell the victim you are aware of what is happening. If the abuser is helicoptering (a common method to limit interactions for their partner) hand them a note in secret or motion to them when the abusers back in turned.

✔️ - Make trusted people aware and create a plan of action. Trusted people are those that won't compromise getting the victim out by talking to everyone or going after the abuser before the victim is safe. Together create a plan on where the person can stay that they can cope in (given their specific disabilities) for at least a few weeks until something more permanent can be arranged. If the individual needs help with ADLs then brainstorm to find a friend/relative who is willing to step in and help until in-home support can be set back up by Adult Social Services

✔️ - Have everything established, pick a day and time where you can be there for the victim. Ring the police and meet them at the house to be of emotional support.

✔️ - Try to put the victims mind at ease by explaining housing and care is in place so they will not be sent to a nursing facility or back to the abuser. Assure her that all her friends and family are now aware and love and support her (nomatter what the abuser has planted in her head)


✔️ - Encourage victim to let police take her to the station to photograph any visible signs of violence and to do a rape kit if the abuser has also been sexually forcing themselves on her. She will be vulnerable and frightened, this causes victims not to undergo these procedures right away (if at all!), allowing time to pass and evidence to fade. It's incredibly important these things are done as soon after they've occurred as possible.

(Pictured: Stop Disability Abuse purple ribbon)

To find out more information on Domestic Violence towards people with disabilities visit Spotlight #2 Disabled People and Domestic Abuse

Lucy At Home

Changing Places Campaign | #FitToBurst Part II | When Doctors Don't Listen

(Title Image: Lady stick figure desperate for the loo, + sign, wheelchair symbol = Changing Places toilets)  This post is part of ...